While home is not in West Virginia, we had to pass through the Mountain Mama to return to North Carolina. Autumn colors were even better than a week ago on the drive North and the weather was perfect.
Spike was kicked out of the Cleveland Clinic this afternoon by the same doctor who insisted he stay last night. Kicked out may be a bit strong. He suggested (as I had previously) that Spike could benefit more from good weather, vigorous exercise and real junk food than he could from anything the Clinic could offer in the next few days.
I heartily agreed and whisked Spike away. I well remember how his long hospitalization in February sapped his strength. Fortunately, he appears much stronger now and I want to keep him that way as he heads into surgery.
Originally, I thought that surgery could occur as early as Wednesday. I was concerned that he would not get insurance approval for a readmission for 48 or 72 hours if he had been discharged. CIGNA has been absolutely wonderful to date but they, like nearly all insurers, require pre-approval of non-emergency admissions. If he simply stayed in the hospital, and that's certainly not difficult to justify when he is having 50+ seizures every day, additional approval would be unnecessary.
Once I thought this through, however, I remembered that CIGNA requires distinct approval of surgery apart from the hospital admission approval. As the official recommendation with regard to surgery will not be made until Tuesday, it is unreasonable to expect CIGNA to offer an instant approval. Therefore, Wednesday appeared unlikely. I then found out that scheduled pediatric neuro-surgeries occur on Wednesdays and Thursdays. Taking all that into account, I realized that a surgery this week is highly unlikely.
All in all, I figured it was better to get Spike home and myself back into the office so I could pay for these jaunts. Which reminds me, again, how lucky we are. When Spike became ill, there was no question about him receiving the best treatment in the world with the best doctors in the best medical centers. A large part of that, of course, is a combination of a good insurance policy and a good insurance company. However, there are all kinds of other expenses that quickly run into the thousands of dollars. I can whip out plastic and just make the problem go away but most people simply cannot.
There was a Mennonite family on the ward with their daughter. I'm not sure what she was in for but she was riding some of the same machines as Spike and they aren't cheap. What little I know of the Mennonites makes me believe that they use a community cooperative form of insurance but also rely on the community itself to cover expenses for a family in need. Nonetheless, a week at the Cleveland Clinic undergoing a battery of neurological tests would likely present a real burden on the whole community. Not a concern in Spike's case.
Other families on the ward looked like simply staying in the area for a week or so could present problems even with good insurance. Taking time off from work is probably an issue as well.
What I have described are likely burdens borne by families actually undergoing treatment at the Cleveland Clinic. What about those who either have no knowledge of the care available at top medical centers or have no means to pay for either the medical or the ancillary costs? There are thousands upon thousands of kids just like Spike who have not had his advantages. I am truly grateful that we can give him the best care but it does make my heart ache to think of families with children who are even sicker than Spike but have little or no access.
I don't know what the solution is but I hope to be some small part of it once Spike gets better. I have already approached Duke with some ideas of how we can help other families and the ideas were enthusiastically received. It's often not even a question of money. Sometimes simply spreading knowledge and letting people know how they can get access to care is a big step forward.
First, of course, we have to get Spike fixed up. The surgical attempt, assuming it proceeds, will likely occur next week. While waiting, I am going to make sure that he gets lots of exercise, has tons of fun and stays away from anyone who looks the least bit sick.